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Avatar universal

Hypothyroid help for my 12 year old son....

I am desperately trying to help my 12 year old son. He was diagnosed with Hashimoto's/Hypothyroidism when he was 10 years old.  The past two years have been a nightmare. He has been to 3 doctors. Levothyroxine has been increased 5 times. He is currently taking 100. His hypo symptoms are still present. It breaks my heart to see what this is doing to him.  He has trouble focusing and concentrating on school work.  He will forget the oral instructions for an assignment.  He will take a U before he will ask for repeated instructions. The slow thought process is also noticeable when he plays sports.  I honesty think he is worse then when he first got diagnosed.  We see an improvement when they increase his medication. He wakes up refreshed. Little things like making sure his shirt is tucked in before he leaves for school. He will get a burst of energy and you can tell he even walks faster.  Then he returns to having a hard time waking up in the morning.  Seems like a struggle to even half way tuck in his shirt. He will get in trouble at school if it isn't tucked in all the way.  Teachers will tell me he is lazy and doesn't care, but then they see a difference when his medicine is increased. His TSH is normal, but I have read not to go by this.  I demanded FREE T3 & FREE T4. The doctor didn't want to do this, but I insisted!  They both came back on the very bottom of LOW/NORMAL.  I think this could be the problem, but what do they need to do?  His lipid studies are so bad. See results and please give advise.

TSH                         1.58       0.34-4.82 uiu/ml
Free T4                    0.60       0.59-1.17 ng/dl
Free T3                     4.4        4.3-8.3 pg/ml
Triglycerides            285       30-150
HDL cholesterol        29        40-60
22 Responses
231441 tn?1333896366
Hi,

his numbers don't look good.  FT4 should be adjusted to at least mid-range and FT3 should be in upper 1/2.

I would be wanting his meds increased to get these target levels.  Once his levels are appropriate should see an improvement in his lipid studies.  

Use T4 med first to get T4 to target.  If FT3 doesn't rise appropriately, then he may also need a T3 med added in.

Don't let them say he is lazy or doesn't care.  He needs his meds adjusted.

I'd also have him tested for celiac and mke sure his Vitamin D and B12 levels are where they should be.


734073 tn?1278899925
Hello, I have a 9 year old daughter who was born without her thyroid gland. So I can relate to your frustrations with his doctors, and hypothyroid symptoms causing issues for him at school. Most people are clueless to how thyroid disease can effect you if not being treated correctly as your son has been. It is not his fault and he can feel so much better if you can get his freet3 and freet4 levels up into the higher side of normal range. This will take an increase in his t4 medication, however, if the t3 does not come up with the t4 then a t3 med may need to be added. T3 is the biologically active hormone that the t4 must convert to within his body to make everything work right.(brain, organs, metabolism, etc.). My daughter was not a good converter of t4 meds, so she now gets her t3 supplimented with a desiccated med. There is also synthetic t3 that can be added to the t4 regeme that you are on. However it is too soon for that as his numbers still show that an increase in t4 is needed, which will hopefully increase the freet3 level as it's suppose to. Diet is huge! My daughter does much better on gluten free, peanut free, low carb, no artificial sweeteners, low sugar (use stevia), soy free, and high protein, and avoid processed foods. Suppliments are important and should be taken at night. Make sure his meds are taken in morning aprox. 1 hour before he eats or drinks milk. Your son is suffering from symptoms of hypothyroidism. Give school a list of the symptoms and don't allow them to treat him badly, as he is doing his best in his ill health. Read and educate yourself mom as you must understadnd this well!Two good books that have helped me are Why do I Have Thyroid Symptoms When My Lab Test Are Normal by Datis Kharrazian and Overcoming Thyroid Disorders by Dr. David Brownstein. Get these on Amazon.com and read them. Also always get copies of your sons labs and keep a journal where you write and date everything on hiim. Don't be afraid to get a new doctor if need be. Get those Freet3 and Freet3 levels up and you will see him come out of this fog he is in. He can be healthy in this disease, however, you must lead the way and advocate for him. Be determined! God Bless!  
Avatar universal
The doctor called today and wants to add a t3.  I asked about increasing his t4 medicine and he said not at this time. I think I need to also have a adrenaline test. Have you been able to control your thyroid in the last 12 years?  Have you had adrenaline problems?
734073 tn?1278899925
That's good news. Do you know how much Cytomel he will be taking? Some feel better on it if it is split between two or three doses per day with the last dose being taken around 3:00. My daughter takes her desiccated medication divided by three doses at 4 hour intervals as it has t3 in it. When I tried to give it all to her in the morning it seemed to add to the adrenal stress that she was already under due to being under medicated and hypothyroid for so long on her t4 only medication that she could not convert well enough on her own. We have had the 24 hour saliva test for adrenals and cortisol  in the past.  Thankfully she is much better now in every way. I hope that your son will be too!
Avatar universal
That is great that she is doing better.  I hope my son does too.  How can you tell if adrenal stress is causing some problems?  They want to start him on 5 mg ( if the mg is right) once a day. Do you think this is wise with his free t4 being rock bottom low normal also?  I thought the free t4 would need to come up also. I need to do the 24 hour test also.  I hope he gets better before school starts.
Avatar universal
T3 is a more active hormone. T4 converts to T3 in the body. Now that the doc is adding T3, your son will get the direct active hormone he needs. This is good that his doc is willing to add it. He can always up the T4 pills later as needed. He may even want to add more T3.

I take 5 Cytomel, the smallest dose. I split mine up by biting half in the morning and half around two or three in the afternoon. Have him eat lunch and then take the 1/2 pill 2-3 hours later and then wait another hour before eating again. Just do your best because I know how much kiddos like to snack. If it turns out that he needs more T3, you can request labwork and ask the doctor to bump him to ten next month.

The reason I break mine up is that it is fast acting and doesn't last in the bloodstream too long. This give me afternoon energy, so I'm not crashing by dinner.

Sometimes we get our right dose within a few months. Sometimes it takes years (especially for those who have to switch doctors until they find one sensible enough to treat FT3 levels). The fact that you have a doc willing to give T3 is a huge step in the right direction.

:) Tamra
Avatar universal
My endo is great at treating both sets of frees, but not so up to par on adrenal issues. I had to go to a holistic doc ( a chiropractor) for the 24 hour saliva test and treatment. :) T.
Avatar universal
A chiropractor will treat adrenal issuses? I didn't know that. Can't I order the 24 hour saliva test and do it at home?
Avatar universal
My chiro did not do the saliva testing but muscle testing if they push on a certain spot and you are weak in your arm they say its adreanal.  He gave me a dietary supplement called Drenamin and I believe I found it on amazon it has C, riboflavin, niacin, B6 in it.  you are supposed to take it 3 times a day but the problem I found is my thyroid meds don't work as well that way so I stuck with hydrocrotizone I take these at night.
Avatar universal
Yes you can order a saliva test through ZRT lab http://www.zrtlab.com/
Avatar universal
You might check out ebay also http://shop.ebay.com/i.html?_nkw=saliva+test+zrt&_sacat=0&_odkw=saliva+test&_osacat=0&bkBtn=&_trksid=p3286.m270.l1313  Not sure about the quality ect but worth a try.
649848 tn?1534637300
COMMUNITY LEADER
Personally, I think it's too soon to give your son the T3 med.  Typically, T3 meds are given because of conversion issues. Your son doesn't have enough FT4 in his system TO convert; and since your doctor won't increase the T4 med enough to get the FT4 where it should be, there's no way of knowing whether you son has a conversion issue or not.  

Another issue could be the T4 med, itself.  Not everyone does well on the generic levo; there  may be fillers in it that don't agree with your son.  Some people can only take synthroid or levo made by another manufacturer, since they all use different fillers.

If you go ahead and give him the T3 med, I agree that you should split it throughout the day, depending on the dose.  I'm on 5 mcg liothyronine - because it's such a small dose, I take it all at once, but I take it later in the morning.  I get up at 3:00 am, take my levo, then take the T3 med about 7:00 - 8:00 am -- that keeps me going until bedtime because I go to bed very early (early to bed, early to rise).  

By the way, according to the insert that comes with my med, cytomel/T3 med can be taken with or without food, so your son would not need to wait an hour after taking it before he can eat, like is necessary with the T4 med.  Like levo, it should be separated from supplements containing calcium by at least 4 hours.

In my opinion, it's time to start shopping for a new doctor.
734073 tn?1278899925
Barb made a good point about getting the t4 up higher first and then see if the  t3 will follow. You may be getting the cart before the horse with adding in the t3 before you really know if he has a conversion issue or not. See if the doctor can increase the t4 med first, as his t4 is at the bottom of the range. This should be atleast mid range or higher in my opinion. As this rises, so should the t3. If it does not, then you know there is a conversion issue and then it would be more appropriate adding in the t3 cytomel to the mix.
Avatar universal
Thats a good point I would try and get his T4 up but personally if this is ever my own situation I would be trying naturethroid.  It made a world of difference in the way I felt verses levo and cytomel.   It's hard to find but worth it.  I had to call every pharmacy 20 miles around me and finally found one that had it.  Good luck with what you do I sure hope your son feels better soon!
Avatar universal
I think getting the t4 up is what they need to do also.  I am calling a compound pharmacy tomorrow.  I know they deal a lot with thyroid medicines. Thank you all for helping.  I want the best for my son. I am still looking online for a doctor in Houston, TX.  The three we have been to haven't been able to get this under control.  I have had to research and ask for test.  They didn't want to do the Free t4 & Free t3 test. Glad they did!
734073 tn?1278899925
I sent you a private message. Please read!
649848 tn?1534637300
COMMUNITY LEADER
I know it takes longer, but you need to get them to increase your son's T4 med, then leave him on that dose for several weeks, test again; raise the med, test -- you have to go slowly.  

You must also keep in mind that FT3 results sometimes lag behind FT4 results quite a bit.  My FT3 results took a long time (over a year) to get where they needed to be, in spite of the FT4 being acceptable.  

I know it's very hard to watch a child go through the misery that this causes, but you have to go slowly, giving each med dosage change time to take effect.  We are all different and meds affect us differently; no matter how badly you want for him to feel well, for your son's sake, please don't push it too fast.  I'd much rather be a bit hypo than to ever go hyper...

I know everyone says that T3 meds work very quickly and will raise your levels almost immediately........I'm sorry, but I have to disagree with that. It does work quickly, as in making one feel better, but I was put on T3 med in Jan '09 and although my levels didn't come up very much at all, according to the lab work, I had some minor hyper symptoms, so my endo dropped my dosage from 10 mcg/day to 5 mcg/day. Having to drop the T3 med, made it take longer for my FT3 levels to come up - the time frame was several months, even while gradually increasing my T4 med.

Please be very careful using a T3/T4 combo (Armour, NatureThroid, etc) because the amount of T3 could be way more than your son needs. There are some who can only do well on these meds, but they aren't for everyone.

BTW -- ALWAYS insist on the FT3 and FT4 being done with every single lab work up.  It's critical to be able to see the actual hormone levels, note the med dosage and symptoms, so you have an idea of which direction to go from there. This will tell you when your son gets to the optimal dosage.

There's a web site from which you can find thyroid doctors in your area.  I don't have it handy, but can get it --
Avatar universal
The doctor will only do t3 at this time.  5 mcg liothyronine once a day. I called the pharmacy and they think the t3 is the best. They said most doctors have to lower the t4 to start the t3, but his t4 is so low that he should be fine.  They said I need to do something now since his levels are so low. Said I can retest and check with another doctor later.  
649848 tn?1534637300
COMMUNITY LEADER
Sorry, I don't understand that. They need to bring his FT4 up to see if he is converting; right now, there's nothing much to convert.  

I was started on T3 med, without lowering my FT4 level.  
Avatar universal
My 12 year old son has the same problem you have described.  He was labeled acaademically gifted in the third grade with an IQ in the 98%.  He was retested in the fifth grade for middle school gifted classes and his IQ dropped 50% points.  It was then that I discovered he was having thyroid problems.  He has become sluggish in his walk and talk.  he forgets homework and seems like he doesnt care.  I knowhim well enough to know that school is very important to h im.  It is really doing damage to his self esteem.  He no longer does well on tests..  not sur ifi t is a focus.concentration issue or anxiety from having trouble in the past.  he is in the normal range of 1.0 tsh and his t3 was 184, also in the normal range.  I was wondering if I should get the TOTAL ts looked at.  Still do not  quite understand them and if it is an important factor.
Avatar universal
Also I suggest putting your son on a 504 plan in school.  This will give him legal right to any modifications he may need.  For example, extra time, water bottle in class,more parent contact, preferred seating, etc.  Your sons teacher will know more about this.Both of my children are hypo and I have them both on a 504 and a health plan.
Avatar universal
My son has had an IEP since he started school.  DX ADHD  at a very young age.  He started having problems in 1st grade. Didn't get the hypo dx till 4th grade.  It has been so hard.  We see a change when they increase his med, but them hypo symptoms return a few months later.  Not sure if they have ever got the dose high enough when they increase it. My son really shows the hypo symptoms on standardized test. If his levels are good he does good. If his levels are off he scores very low. I read to test for FREE T4 & FREE T3. Free 3 is what the cells use. Most important hormone. This confirmed the hypo symptoms. His TSH was normal.  What ever normal means! It breaks my heart that he has to deal with this.  My older son has hashi also.  His TSH & Free T4 are normal, but he has hyper and hypo symptoms.  I am taking him to get his Free T3 tested.  He had severe problems when he started school.  DX with several things, but it went away.  Thyroid never was tested in the boys until my youngest had severe symptoms and a goiter.  What are some of the other symptoms you see in your son.  Does he crave foods at times?  Hot or cold all the time?  My oldest is cold & thin and my youngest is hot and filled out. Oldest wakes up fine in the mornings.  Youngest has a hard time getting up and getting going.  Very slow, but when he has an increase in med he pops up, gets dressed and is in a good mood. Sounds crazy but when the hypo symptoms are there I have to stay on him to take a bath.  Like he just can't get going to take a bath.  When he has an increase I don't have to tell him to take a bath.  So many other things.  Just wanted to see what you see in your son.
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